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You Don’t Need Wheels To Be A Derby Girl

Posted by on Oct 3, 2016 in acceptance, coping, Creativity, featured, guest author, inspiration, resilience | 2 comments

This post was guest written by ChronicBabe Sandra Gordon.   The Olympics has just finished and we are all sitting on our couches, thinking it might just be time to get up and do something. But then we think that’s easier said than done… or is it? I have Crohn’s disease. I diagnosed when I was 16 – quite a long time ago. When my symptoms hit, I had just achieved one of my best finishes in a 3K cross-country run, was curling regularly, was only a couple of years away from a black belt in karate, and was taking lifeguard training. Once I became ill, the most exercise I got was a quick dash to the bathroom. Six months later, things looked pretty different – in a good way. I gave up running and changed curling teams, but continued with karate, albeit at a slower pace. How was it possible? Open discussion with my sensei about what I could do and what I needed help with. I was allowed to sit down when needed and dash off to the bathroom without notice. I never got that black belt but I did have fun, and that was the point! I have been able to lead a pretty active life through good medication, diet, and surgeries (eventually a stoma in 2005). But I also know that is not the case for everyone. There is also a big difference in changing your expectations when you are 16 compared to 30 or 40. Back to getting off the couch: Now, I am a 40-something adult living in the third country in my life and working in the fourth. I don’t do karate, curling is not a thing here, and running… only for the bus. So what am I doing now? Roller derby, of course! But not how you think. I am a skating official (referee). This short essay can’t fit all the fun I have! But I can tell you life is different on the other side of sport. Behind every sporting event there are officials. Sometimes you need to be more able-bodied, and sometimes you just need to sit in a chair and understand the rules and the game. There are people who handle stats and organize players and officials on the day; they don’t have to have the most able bodies. There are also people who, before the event happens, book the hall, arrange the contracts with the teams, and arrange for sponsors and treasurers. Some of those positions don’t even require you to leave your house, but they are critical to making sporting events happen.   Non-competitive options for sport: That is where you, as a ChronicBabe, can come...

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Laugh, ChronicBabe!

Posted by on Sep 26, 2016 in acceptance, coping, featured, friends and family, humor, inspiration, resilience | 3 comments

This post was guest written by ChronicBabe Elizabeth A. Delisi.   “He who laughs last, laughs best.” Famous saying…I don’t know who coined the phrase. I suppose it could be interpreted as a courageous act – you know, “Laugh and the world laughs with you; cry and you cry alone.” And there is no place more needing of a laugh than when a ChronicBabe is fighting a chronic disease. My dance with disease began in January of 2010, when I pointed the remote control at the television and noticed my hand was wobbling up and down. What the heck? The trembling in my hand continued to get worse, so I saw a neurologist and was diagnosed with Parkinson’s Disease in August of 2010. That was the day that my life, and my future, changed. My sister, who had accompanied me to the doctor, asked me how I felt about the diagnosis. I said, “I feel numb.” And to tell the truth, that feeling lingered for some time. I felt fine other than the tremor in one hand…so how could I have an incurable disease? Well-meaning people tried to get me to join support groups, but I turned them down. I was struggling with the diagnosis as it was. I was afraid if I saw people who were worse off than I was, farther down the disease’s road, I’d give up all hope. My attitude toward Parkinson’s started to change when I read three books written by a fellow Parkinson’s sufferer, Michael J. Fox. He spoke of how the disease gave him a chance to restructure his life and his priorities, to look at all the positives he had instead of focusing on the negatives. His words struck a chord with me, and I figured if he can be positive, so can I. It was easier said than done. The symptom that bothered me most wasn’t the tremor, the slowness of movement, the stiff muscles, the fatigue, the weakness, or the inability to focus. I could have laughed at them. No, my least favorite symptom was a nasty case of anxiety that popped up frequently, in all sorts of situations. And it was hard to laugh when I felt an impending sense of doom hanging over my head. But I had a husband, children, and grandchildren. I needed to do more than put on a brave face for them. I had to accept what I couldn’t change, and try to be light and happy as much as possible. The easiest way for me to project joy was to make what the kids always called “Mom jokes.” My husband, Dan, had “Dad jokes,” too, but his were of a different character....

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Whatever You CAN Do is Enough.

Posted by on Sep 19, 2016 in acceptance, coping, featured, friends and family, guest author, inspiration, resilience, self care | 11 comments

This post was guest-written by ChronicBabe Catherine Richardson.   I spent the first three years of my life with chronic illness completely unaware that I even had a chronic illness. I had daily symptoms and I even had a diagnosis, but a chronic illness? Sick? No. I wondered why it seemed like I had a harder time doing life than everyone around me, and I pushed myself too hard and stretched myself too thin in an effort to try and make up for that, but it never even crossed my mind that what I was dealing with was a chronic illness. After I got so sick that my whole life fell apart, chronic illness was still a really tricky concept to wrap my head around. It seemed horribly misplaced when used to describe me, but once I knew what I was working with I was able to start to reassemble my life accordingly. Four years later, chronic illness is my normal, and along with it have come other words and terms that I never imagined would be part of my life, words like hospital, feeding tube, central line, wheelchair and disability. Nothing about any of this has been easy, but that transition from the before to the after of realizing I had a chronic illness was also when other words and terms such as self-care, management, advocate, chronic illness community and acceptance became part of my life. These words are what have allowed me to cope with the scarier ones. My heart aches for that earlier version of myself because even though she was in better physical health than I am now, she so was burdened by the feeling that this was something she had to overcome and if she couldn’t make herself better it would be her fault. If I could go back in time I know exactly what I would tell her. It’s the same thing I tell myself so often when I’m worried about not being able to keep up. It’s what I tell myself every time I wonder if my brave face is going to be brave enough, every time I feel torn between what I think I should be able to do and what I realistically can do, and every time I try not to get my hopes up too high because I never know what my body will throw at me from one day to the next, even from one hour to the next. It’s also what I told my friend a few weeks ago when she used every ounce of energy she could muster up to attend a wedding yet she still wasn’t sure if it would be enough to carry her...

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A Voice from Better-Land

Posted by on Sep 12, 2016 in acceptance, coping, fears, featured, guest author, resilience | 2 comments

This post is guest-written by Faith Cornwall. In August of 2004 I was diagnosed with vulvodynia, a chronic pain disorder of the vulva, after what felt like five very long months. Finally, there was to be an answer, a solution, a CURE! Uh, nope. The gynecologist told me I should be grateful to have a diagnosis – an empty word – as they used to tell women that they were imagining the pain, making it up. And then she showed me the door. I googled the bejeezus out of my diagnosis, my experience, my symptoms, and found only a few abandoned blogs where affected women spoke of wanting to die. I wondered: did the blogs stop after a few posts because these women got bored, killed themselves, or, ever the optimist, perhaps because they had gotten better but never bothered to give us an update? Either way, it was not the community I was hoping for. But I promised myself I would get better. I was a college student then, and looking back I had something better than an online community: I had a group of bad-ass in-real-life friends, both men and women, who bravely stood beside me in the darkness and said, with that special bravado unique to ridiculous college students taking on the world, “F*** this S***!” Their courage lifted me up. Yes, I would get better, for me, and for all the women suffering as I did, past, present, and future. For all the women who were told their pain didn’t exist. For all the women who were shown the door. And gosh darn it, I did. It took a decade plus, during which I learned that healing can be a complex, multi-faceted, life-long, and sometimes vomit-inducing roller coaster of a process, and, at least in my case, took information, inspiration and help from resources far and wide, traditional and innovative, well-established and groundbreaking, logical to the head and sometimes only to my heart. Life being Life, I can’t guarantee I won’t have additional relapses. I never know if some new day might bring some new illness, as it has so many times in the past. I still live with a handful of health challenges, and although they too require love and care, they are not as debilitating as the previous visitors. But for now, I am better. My “work-in-progress” self is experiencing a prolonged state of Better. So, to you, Dear Hearts: I cannot guarantee an outcome. I do not know your solution, although I wish I did. But I can share my experience, molded over a decade of living with a tangle of debilitating chronic health issues. Better is Possible. (Gentle Note: It may not...

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Round-Up: Emergency Preparedness Posts, All in One Place

Posted by on Sep 6, 2016 in ChronicBabe Basics, coping, featured, guest author, practicalities, resilience | 2 comments

We’ve had such a terrific response to Kyrie-Inn’s series of emergency preparedness posts. And ironically, this babe is in the middle of the worst-hit part of Florida by Hurricane Hermine! But because of her awesome preparation, she and her dogs, Tao and Mijo, are doing just fine. We here at ChronicBabe HQ recommend you review her posts and get yourself prepared – we’re doing it, too. Here they are: Part 1: Managing your phone for crisis situations Part 2: What to stock in your residence for for various emergency situations Part 3: Creating a bug out bag We are proud to host this series on emergency preparedness for ChronicBabes. Have anything to add that we’ve forgotten? Hop into the comments for each post and share your tips....

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The Art of Being Chronically Ill

Posted by on Sep 5, 2016 in acceptance, career, coping, Creativity, fears, featured, guest author, inspiration, resilience, Work | 12 comments

This post is guest-written by ChronicBabe HellyTheElephant. It is never easy to be creative. If you have been told you are talented then there is always the fear of a negative response; if you have never felt you are any good, then illness can amplify your lack of confidence. But as that great artist Dr. Seuss put it: “Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.” So…I have my work propped up while I am lying down on my bed in the Hellyphant house (SW England). The blinds are shut, crayons are rolling around the duvet, and I have just dipped my paintbrush in my herb tea. Readers will be relieved that this hellyphant is not wearing the hotpants and striped tights she wore as an art student some moons ago; neither am I sporting a beret and a smock (although come to think of it one would hide my unwashed hair, and the other could conceal my muffin-top…). The first time I was chronically ill was in the nineties. There were no Internet forums (…and no ChronicBabe!), so info was hard to come by, and writings about ME (Myalgic Encephalomyletis) were still in the cave-painting stage. I had been a 22-year-old professional illustrator…Then I got sick. Really sick. And, well, the rest of my story probably follows similar lines to your own: you search for answers, you assume you will get better…until you realise this is going to be a marathon not a sprint (ironic as you definitely won’t be doing either!). Now 26 years greyer, and with ME reducing me to about 30% of function again, (even during my time of being “well” it had never entirely gone away,) not that much is lovelier the second time around. However, I have been really blessed by marriage to Mr. Helliphant (who is also a chronic health dude), and a strong faith. The other thing that is really different is this time I proudly label myself a “Horizontal Artist” due to the fact I can only work lying down. Initially I was happy to have time to be scribbling again, and I drew nature – the flowers friends brought me. I had no idea of how I could paint the sense of frustration and disappointment that was growing week upon week.   There was “That Day.” “That Day” started with the sound of the last straw being added to this elephant’s painful back. I was several days into a grisly flare-up, with no answers from the medics, and in a lot of pain with no effective painkillers. I felt furiously angry at everything and everyone. How...

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WE’RE NOT DOCS!

Info posted here should not be considered medical advice; it's not intended to replace consultation with physicians or other health care providers. 

Every Babe needs to find her own path for achieving optimal wellness. While we do tons to help guide you, it’s up to each of you to make well-informed choices and live with the consequences. ChronicBabe.com assumes no liability or responsibility for stuff that goes wrong.

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Take what you like from this space, and leave the rest. Use what you learn to make your life better. Be responsible for your own choices. And please don’t sue us. XO!

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